Update

We are seeing a very rapid decline. Kyla did not respond to much at all today. Yesterday she slept most of the day but was able to rouse enough to eat dinner herself at the table with very little help from me. I had to feed her breakfast and lunch but she was awake and able to eat although had difficulty moving food to the back of her throat. When I checked her at 2:00 am, she had a very bad headache but was unable to answer me when I asked her about her pain....just nodded. I gave her the pain meds and she seemed to be able to rest after that. Her eyes were open this morning for her bath but she does not have any muscle control much now. She did not respond much at all today, just a few brief moments, one of those was when her friend, Teresa and her daughter, Delaney were here. She opened her eyes and motioned for Delaney to come to her and stroked her arm for a few minutes before going back to sleep.

Barb came and spent the morning with us yesterday and the nurse also made a visit. Kyla is having tremors off and on and her feet and hands, especially her left hand, are posturing. Jill helped me today to take her to bathroom and because it seems to be so hard on her I decided we should probably not move her from the bed any longer. It just seems to take so much out of her. She woke up tonight around 10:30 and said hi to Dave and responded with a nod that her head hurt. She was able to swallow her medications for seizures and pain crushed in applesauce followed by a couple of sips of water. She ate very little today, just a few bites and sips. I feel time is short for her. Maybe tomorrow will be better.